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Parents as advocates: the role of health literacy in parenting children’s needs

Kamil Fulwood Spagnoli

Kamil Fulwood Spagnoli

This post is written by Kamil Fulwood Spagnoli, a Graduate Fellow at the Center for Health, Media & Policy. Ms. Fullwood Spagnoli is working towards her MS degree in Health Communications at Boston University. She plans to focus her health communication work on people living with disabilities and maternal child health.  Her full bio is here.

I recently had a personal experience with the Early Intervention (E.I.) program in New York City that illustrated how populations that aren’t proficient at wading through health information may be at risk of receiving a lower quality of care.    

The E.I. program was created by the federal government to provide evaluation and therapeutic services to children under the age of three who may not be meeting developmental milestones. There is a body of evidence that suggests addressing developmental delays sooner rather than later is highly effective in overcoming these delays

I am a well educated and health literate person. Most times, I have the privilege of having ample time with few competing distractions when I schedule appointments for my children.  For parents with survival concerns, spending countless hours in waiting rooms and then knowing how to argue and advocate to get the needed services for their child just may not be possible.

Parents advocate for their children daily. That’s our role. However, in this situation  I found it necessary to strongly advocate and challenge the system through every step of the Early Intervention application process for my son.  I had done my homework and knew what his needs were. I researched and knew the recommended therapies that he would benefit most from. Prepared and vocal, I was able to successfully advocate on his behalf and obtain services he needed.

Successful but exhausted it made me wonder about the experiences of other families who for many reasons including literacy, language and cultural barriers would find themselves unable to push to get what they need from  this program in order to meet their child’s needs. 

In a discussion with one of the program’s management officials I learned that the staff are not clinically trained. This person tried to defend his staff and explain to me that they are trained to match services to each child with current administrative guidelines and the reality of budgetary constraints.   

This information made me question whether the needs of every child are being met equally and adequately.  If parents are not health literate, unfamiliar with their rights or the ins and outs of how to work within this system, their child could suffer the consequences. 

Then the next question is: how does this unequal treatment of therapeutic services impact these children’s health and education outcomes? 

Many of the families who participate in the Early Intervention program have limited resources. Resources like education, communication skills and literacy are the building blocks of making informed health decisions.  This is an important question for us to answer– are children enrolled in a federally created program to address their developmental needs at an early age experiencing differences in outcomes based on their parents’ health literacy and ability to advocate?

Parents and legal guardians, the most important people in their child’s health and developmental process should have access to health literacy and advocacy training at the beginning of the E.I. process. Then their children will be better served resulting in better overall outcomes from the services in the program.  

Parents and legal guardians are key in the health and development of their children. In collaboration with their child’s health care and educational professionals, everyone is stronger in addressing that child’s health and development.  They become even better equipped to understand what a child’s needs are and can advocate for them. 

Parents who have these skills will then use them to enhance the lives of their families when facing other challenges.

Then we all win. The child, the family the community.

Healthstyles: Judith Schwarz on End-of-Life Choices plus Bedpan Confessionals

WBAIHealthstyles host Barbara Glickstein interviews Judith Schwarz, RN, MSN, Ph.D., a nurse expert in end-of-life issues. She retired from her position as the Clinical Coordinator of Compassion & Choices of New York and is now in private practice consulting with patients and their families on end-of-life decisions. On 11.17, reporter Nick Tabor interviewed Dr. Schwarz for The Daily Beast “The Nurse Coaching People  Through Death by Starvation”

Listen to the interview 

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In the second hour you can listen to “The Bedpan Confessionals: Tall Tales of Truth By Nurses, For Everyone

This writing series was curated, directed and hosted by Amanda Anderson for this past Fall’s LitCrawl NYC. Ms. Anderson is co-director of Hunter College’s The Nurses Writing Project.

Hear from LeeLee Milner, RN, PMHNPpractices as a psychiatric nurse practitioner in the homes of her patients all over New York City; Amy Berman, RN, BS, senior program officer at the Hartford Foundation; Roma Arellano, RN, BSN, CCRN, experienced intensive care nurse and advocate for night shift nurses; and Ellen Cohen, RN, CNM, author of the recently published book, Laboring: Stories of a New York City Hospital Midwife.

Listen to the Bedpan Confessions 

Healthstyles can be heard every Thursday at 1 PM on WBAI 99.5 FM Pacifica Radio.  It is also streamed live at

What Would #ThisNurseSay? Hard-Hitting, Expensive-To-Produce Hyperlinking

This post is by CHMP’s graduate fellow, Amanda Anderson, RN.  Amanda is a practicing bedside nurse in Manhattan, and a grad student at the Hunter-Bellevue School of Nursing, where she co-directs The Nurses Writing Project. Her personal site, This Nurse Wonders, hosts her writing, and she tweets @12hourRN

photoPerhaps I should have started this blog with a disclaimer: I read the paper. As in, I’m one of those worldly city dwellers helping to keep the New York Times’ shrinking home delivery market afloat. In addition to killing trees each morning, I eat pricey doughnuts in my $10 million kitchen. Or so I’m told.

My preference for formal, in-person breakfasts with The Grey Lady means missing out on hyperlinks. With newsprint wrinkling between my fingers, an article by Richard A. Oppel, Jr. about the new VA chief’s push to hire more clinicians, that mentioned nurse practitioners, seemed promising. But later, online, the same, “…nurse practitioners…,” led me to a chronological listing of all NYT nursing content. It took me a minute to realize I had landed on the equivalent of a generic Google search.

The lone, nurse-centric sentence in this article, which is about the VA Health system’s push to solve its critical shortage of providers, calls attention to the widely discussed idea that nurse practitioners might be a crucial part of the solution. But Oppel’s link wastes an opportunity for readers to understand the real story – or anything pertinent – about nurse practitioners.

The hyperlink is the modern-day citation, and really quite incredible. As a writer, it’s your wild card chance to allow your reader to choose to go deeper into the story, into another dimension of comprehension. Obviously, if, as a news organization, you hope to garner as many clicks as possible, it’s good to stick to self-promotion, like the Times largely does. But a well-linked piece not only has the power to contextualize an unfamiliar subject, it moves readers to act beyond the page before them.

A strategic hyperlink also helps readers see between the lines, behind the newsprint. Oppel’s mass-linking shortchanged his readers from understanding the specific reality that this new VA administration could bring to patients via its use of nurse practitioners: By filling provider gaps with these highly-capable clinicians in all fifty states, the VA would likely play a critical role in decreasing NP barriers to full practice, while simultaneously fixing its own short staffing. Regardless of the Times’ stance, readers should get a chance to enter this dialogue.

So, when the Times broke from its usual MD-speak and referenced “nurse practitioners” in print, it felt like a celebrated event. Deflated by his lackluster online follow up, I asked Oppel for an explanation. He dismissed my query with the simple: “I assume he [the copy editor] thought it would be good for people who wanted to read more about nurses and NPs.” Although Oppel linked other topics in the article similarly, it’s interesting that “doctors” wasn’t one of them.

I don’t think many nurses recognize the true power of the almighty click.  With each hyperlink we post or share, we pass along our stamp of digital endorsement, one that says we hope the organization or author we linked, sees more page views, readers gained, money made, information spread, and maybe even policy improved. Linking and getting linked to is a way of sending business, like an intentional product placement.  Me linking to these hard-hitting Times folk will likely go unnoticed, but if they linked to this nurse? Well, shoot. So, while it’s nice that Oppel gave the public a shortcut to the Times’ comprehensive nursing content, I’m starting to think twice about pushing free advertising – via my hyperlinking – to an orgaization whose linking morals don’t really line up with my own.

You see, the content behind Oppel’s link isn’t the biggest issue, here –  I’m primarily frustrated by its lack of intention. When I’m reading a sentence that suggests the existence of an ongoing discussion about a topic, it’d be a lot more helpful if I was directed to content that furthers my understanding of its specifics. Oppels’ – and his editors’ – blanket-link to all nursing content, when writing specifically about the role nurse practitioners play in solving the shortage of primary care physicians in America, suggests they see the nursing profession as a simplistic and one-dimensional topic unworthy of an intentional link.

Oppel didn’t have to take a stand, but he didn’t have to halfheartedly link, either.  I found plenty of articles via his original link that might’ve prompted a meaningful dialogue about this topic. After I typed in, “nurse practitioners,” that is.

Healthstyles: HealthCetera, FierceforBlackWomen, Bedpan Confessionals

Tune in:

photo credit: Microsoft Lumia Conversations

photo credit: Microsoft Lumia Conversations

Barbara Glickstein hosts this week’s Healthstyles on WBAI Pacifica Radion 99.5 FM streamed at at 1PM to 2PM.
She opens with HealthCetera:
Hear her interview with Colleen A. Daniels, the Director of TB/HIV Project with the Treatment Action Group, an independent AIDS research and policy think tank fighting for better treatment, a vaccine, and a cure for AIDS and its two major coinfections, TB and hepatitis C. She reports on the findings of the 2014 Report on Tuberculosis Research Funding Trends, 2005-2013.

“Collapsing pharmaceutical investment in a disease of global concern such as TB is alarming,” said Colleen Daniels, TAG’s TB/HIV project director. “Public and charitable institutions have matched and exceeded investments made by pharmaceutical companies in their own products, but it hasn’t been enough to keep industry involved. The current R&D model is broken and is failing TB patients, who have had to wait decades for better diagnostics, drugs, and vaccines to fight TB.”

In the second part of the hour she celebrates the first anniversary of‘s with co-founders Yanick Rice Lamb and Sheree Crute.
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This week’s Healthstyles ends with the first of a series of readings from the live recording of “The Bedpan Confessionals: Tall Tales of Truth By Nurses, For Everyone”.
Listen to the series here:

Digital divide hurts seniors with low health literacy most

When it comes to the benefits of electronic health records, older Americans may be left behind, according to a new study.

credit: Korean Center

credit: Korean Center

Less than a third of Americans age 65 and over use the Web for health information and barely 10 percent of those with low health literacy – or ability to navigate the health care system – go online for health-related matters, according to the nationally-representative study by researchers at the University of Michigan. Study results appear in the November 2014 issue of the Journal of General Internal Medicine.

“In recent years we have invested many resources in Web-based interventions to help improve people’s health, such as electronic health records designed to help patients become more active participants in their care. But many older Americans, especially those with low health literacy, may not be prepared for these new tools,” said lead author Helen Levy, Ph.D., research associate professor at the U-M Institute for Social Research in a press release.

“Our findings suggest that there’s a digital divide when it comes to health care. Older adults with low health literacy especially represent a vulnerable population that’s at high risk of being left behind by the advance of technology.”

Over the last 5 years, use of electronic health records in the U.S. has increased dramatically as a result of government initiatives and investment by healthcare providers. Many providers now offer patients access to parts of their own medical records via online health portals that include everything from reminders of when they are due for wellness visits and screening tests, to immunization records and lab results, as well as key information on obtaining and using their prescription medications correctly and safely.

“Health information technology promises significant benefits, but it also comes with the risk that these benefits won’t be shared equally,” said senior author Kenneth Langa, M.D., Ph.D., professor of Internal Medicine at the U-M Medical School and research investigator at the Center for Clinical Management Research (CCMR), VA Ann Arbor Healthcare System.

“The Internet is becoming central to health care delivery, but older Americans with low health literacy face barriers that may sideline them in this era of technology. Programs need to consider interventions that target health literacy among older adults to help narrow the gap and reduce the risk of deepening disparities in health access and outcomes.”

Regular readers of HealthCetera may be familiar with previous stories about the need for health systems and organizations to address issues of health literacy and digital divide — especially among the older population. Digital literacy has been associated with slower cognitive decline, enable more people to age healthy at home, improve decision making, and facilitate care coordination. Older adults are eager, willing, and able to learn about technology, just ask the seniors featured in our report about the Senior Planet technology center.

However, educational and income disparities — huge drivers of poor health literacy —  continue to be a hurdle many seniors can’t overcome. Policymakers, clinicians and community service organizations must pay closer attention to e-health literacy interventions targeting the needs of older adults, before more older adults slip even further behind.


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